Hi everyone,
I would like to introduce myself....sorry if its a bit long.
I found you guys a few weeks ago after finding a possible link between my varied symptoms and gluten sensivity/celiac. So, i really wanted to say hi and thanks for the wealth of information on this forum which specifically has helped me at the doctors this morning!!
First let me explain…….
Here is a summary of my history:
Child to young adult:
Unexplained fainting
Sinusitus
Throat infections
Mild asthma
30´s
Chronic headache
Migraine
Brain fog
Vertigo attacks
Dizziness
Fatigue
IBS diagnosis following chronic diarrhea with urgency and abdominal pain
Severe sickness throughout 2 pregnancies and generally feeling unwell
Post natal depression diagnosed after both births
40´s
TMJ
Chronic headache
Migraine
From 2009 - 24/7 dizziness with associated symptoms such as inability to concentrate/think, confusion, disorientation, vertigo attacks. Huge amount of tests with different specialists including MRI scan. Diagnosed with Migraine Associated Vertigo in 2011.
Decreasing energy levels
Decreasing muscle strength
Anxiety and irritability
Joint pain
Diverticulosis diagnosed following routine colonoscopy in 2010. (Mother died of bowel cancer.)
From October 2014 - Fatigue, aching limbs, numbness in hands and feet,
From November 2014 - Chronic diarrhea with urgency and stomach pain.
Weight loss
From Feb 2015 - Intermittent diarrhea, chronic total abdomen pain, shortness of breath, fatigue continues
Yesterday – Some sought of breathing attack……Asthma attack? Panic attack?
The locom GP standing in for my normal GP ran some basic blood tests in November after the onset of symptoms late October of last year. All negative.
In February on return to the GP I saw by chance the locom again and he said he would run a celiac test as well as other specific tests (thyroid (again) for example) and a stool sample.
Now i should also mention that my 16 year old son has also had intermittent varied symptoms over the past year/ 18 months and had basic blood tests run last year. His symptoms are: Headaches, nausea, occasional diarrhea, intermittent abdominal pain (weekly,) weight loss, night sweats. Sporadic fatigue. He also has ADHD. So the locom doctor said that I should see my sons doctor and get him tested too. Which I did and he said he would run the test for celiac as well as other specific things.
So we both had our blood taken about 10 days ago. (We have not made any changes to our diet yet and are consuming gluten.) I could see from the print out i was given for the nurse that both of us ONLY had the tTg IgA done out of the celiac panel....
I go the GP tomorrow for my results but I have been this morning with my son to see his GP. I of course went armed with the full list of the celiac panel tests as having spent some time on this forum I just knew that I was going to need them..........and it´s a good job I did...
All of my sons tests were normal which on one hand is of course good news but also I think we are no further forward with knowing if he may have celiac disease.
tTg IgA - 0,1 U/mL <12 negativo. 12-18 undetermined. >18 positive
So, his tTg IgA is very low isn´t it...0,1? and could be a false negative given that we do not know what his Total IGA serum is???? (immunoglobulin A??) He could be IGA deficient.........?? Am I understanding this correctly?
So I asked about the total serum IGA and how the tTg IgA could be a false negative but he didn´t seem to know what I was talking about and kept saying that the IGA antibodies were low so therefore no inflammation. I persisted about the Total Serum and showed him the celiac panel list and he agreed to run an Immunoglobulin A but not any of the others. So my son will go back tomorrow morning for the nurse to take the blood and wait another 10 days for the result!!
I think my appointment tomorrow is again with this locom and I really hope he has read up a little about celiac testing by then….I know that it is best not to go gluten free until all the testing is complete but this could take forever at this rate….I have already decided that if all my testing is negative that I will go gluten free anyway as I have nothing to lose and can only possibly gain….
I understand the national health service not wanting to run the full panel immediately due to the cost but you would think that they would run a Total Serum IgA with a tTg IgA. If absolutely necessary we can look at going private to get all the required testing done with a gastroenterologist if no referral is made to a specialst on the spanish health system.
Thanks for listening and I would welcome your thoughts on our symptoms and testing so far/ and in the future.
.png)
